An Open Letter to my Caregivers

Having a chronic illness, a lot of people have vanished in my life, but you have never left my side. You have seen me through the good times and you haven’t left my side through the dark times. With all of the bad in my life, you bring the light back into it. You care at times when I think no one else does. You have held my hand while laying in a hospital bed, held my hair back while I threw up, and picked me up off of the ground when I have passed out. Not many people would want that kind of responsibility but you never hesitate to help. I despite being the reason you stress 24/7, and stay up til 1 a.m holding my hand because I can’t sleep, and being the reason you cry because we just have no idea what to do anymore. It honestly kills me to see you cry, because of me. Even though this situation is complicated, the bond we now share is unbreakable. You know every part of my life. You know the person I am, at times more than I know myself. You see strength in me when I didn’t know I had anymore strength left. There was a point in my life where even the doctors didn’t know if I would make it, but you fought so hard for me. You have stepped out of a doctors office and said we will find another doctor, because they said they didn’t know what I had. You didn’t give up when everyone else did. You always believed in me at times I didn’t believe in myself. You reestablished faith back into my life. There are 5 words you say to me all the time that will forever stick with me, “I will never give up”. It feels like before I became ill, those words felt empty to me. But now when I hear them, they give me more strength, because now I know I will never go through life alone. I will spend the rest of my life trying to repay you, but it will never be enough. I don’t define a hero in a cape, or wearing a mask, or with superpowers. If I am asked who my hero is, I show them a picture of you. You truly have saved me. I am forever grateful for you.

54 thoughts on “An Open Letter to my Caregivers”

Mackinzie
I am so impressed with your strength and your humble Love for your caregivers. You ARE an inspiration to me, in so many ways. Know this precious woman I am here for you any time of day or night.
Just reach out!!!

The passion and sentiment in your letter is absolutely beautiful. Having three children of my own who are nurses and caregivers, the words you wrote, have deep meaning. I pray whatever your going through now, that it comes to pass soon and you’ll be back to being healthy.

Thank you so much!! That means a lot! I think it’s amazing your children are in that field, nurses and caregivers don’t get the credit they deserve! It takes special people to take on that job. And thank you!!

Thank you so much! It’s hard but just going a different path. So far I’ve been diagnosed with scleroderma, celiacs, sjogrens, fibromyalgia, pots and possibly lupus. And thank you for your kind words! I appreciate it!

Oh it is just a cool little store – with fun items and like 1/4 of the store is wine – but i mentioned it because they carry this version of L acetyl carnitine for five dollars and it is one of my favorite supplements – it is good for the brain and I wanted to try it for years and finally did a it six months ago and it is just great – I might post about it later – but! The reason I mentioned it here is cos someone just told me that it is also ideal to take for people with alcohol abuse and – and chronic conditions – esp Lyme and lupus –
I know your docs would need to approve it – but just wanted to mention it to consider

You’re welcome, yes, imagine they can do the things that the family members should have done. Even me I feel guilty reading this letter. I I can’t imagine how the family cannot think the time there parents had done to them when they are still a baby

This is beautiful. I have Cerebral Palsy and when I was in middle school and high school, I had aids that would walk around classes to classes with me and take notes and just be there for me. They always bought me special treats and birthday presents and the one I had in middle school found a way for me to have the guy I liked go to the Valentine’s Day dance even though he went to another school. I love that they felt like friends even though were just helping me. May God make your bond with your caretakers grow even stronger and may He be your strength through your chronic pain. You have a beautiful heart and thank you for bringing back those memories. I’ve been having a rough few days but this letter really touched me. Don’t give up. ❤️

Wow, thank you so much! That truly means a lot to me. I’m so glad you had such amazing caretakers. They really are blessings. You’re so sweet, thank you! Your comment made my heart very happy! I wish for peace and happiness for you! Never give up! ❤

This sounds exactly like my husband and I. I honestly don’t know what I would do without him. First diagnosis was Carpal Tunnel, then came Achilles Tendonitis. By 2016 we added Osteo Arthritis and Fibromyalgia and then in December added Major Depressive Disorder, Chronic intractable Migraine with Aura, and PTSD. The ironic part: the brain lesion is the only thing not causing any problems! This also made me think of a song from the 80’s: that’s what friends are for: https://www.youtube.com/watch?v=RpuWc3czRvI

Dear Mackenzie,
This is such a lonely path for both you and your caregiver. Kudos to you and your caregiver for never giving up. Doctors are just humans and, as such, are fallible. Keep digging for answers and care providers until you find them. Blogging about your truth is a blessing for others. XOXOXO